How two states are integrating social health data into their information exchanges

In Nebraska and Iowa, information on housing, transportation and other non-clinical needs is being exchanged electronically.

Doctors and health care organizations know the importance of social factors in determining patients’ health outcomes, but often are frustrated by their inability to securely exchange this information in electronic form and integrate it into a patient’s electronic health record.

In 2020 Cync Health, the state health information exchanges (HIEs) of Nebraska and Iowa began taking steps to address that problem by partnering with Unite Us, a technology company that builds networks of health and social service providers, to provide behavioral and social health information on the two states’ HIEs. Medical Economics sat down recently with Jaime Bland, DNP, RN, president and CEO of Cync Health, to more about the program.

Medical Economics: How did this initiative get started? What was the impetus behind it?

Jaime Bland: I started my career as an RN, so I have a background in care coordination. So when I came to the HIE I really wanted to incorporate the data that nurses and care coordinators working in the community need to leverage for better patient outcomes. That led me to onboarding various social care strategies, which is where we began to partner with Unite Us, to really facilitate that whole person picture of health.

ME: Why is it important to include social health data in information exchanged among clinicians?

JB: We’ve long known that the social care category—housing, transportation, food, utilities—impact health care outcomes. So knowing this information about an individual enables us to inform our clinical decisions when patients are ready to leave the hospital or for making recommendations on nutrition or even looking at access to care, these components around social determinants influence how we care for patients as clinicians as well as make decisions about how we discharge folks from hospitals.

ME: How’s it going so far? Is there any evidence that it’s helped either individual patients or on a population level?

JB: Well, a lot of these platforms are immature. The recent entry into market of social care platforms, vertical integration, bringing that data into EHRs really just entered into the U.S. Core Data for Interoperability (USCDI), which is what codifies those data standards in the electronic health record, was something that was just finalized this year in the interoperability rules to include those social care components.

So as we’re working through the technology and integration components I would say that we’re early. This is very similar to how we rolled out computerized order entry 20 years ago, and how we began to understand the workflows and data standards and the need for extracting information once we enter the information.

So I think it’s very much still in the early stages of integration into health care, and merging social care with health care is challenging. We know this just from the manual processes we have in place today. So the approach to codify the data standards and build out workflow that meet both health care and community needs is a huge task. We’re two years into it and we’ve had a lot of learnings from it and we’re adapting and modifying. We brought in United Way and 211 as partners in community engagement, and one of the things we’ve taken away is the community convening piece, which is where I think this fits very nicely with HIEs, is that we’re a neutral convenor. We’re trying to facilitate interoperability as well as building a longitudinal record that follows the person, so it really made sense for us to take a lead role in convening the community, agnostic to health system, agnostic to vendor, and leveraging other community data collection points and bringing those into one work group.

ME: What sorts of glitches have you encountered and how have you resolved them?

JB: We needed ONC to develop their data collection standards for EHRs so there still are components of data we can’t integrate because the EHRs aren’t to a point where they can take that incorporate that data in a structured way. So as the 2015 certification is upgraded to include more social care components the more we can bring that structured data into the EHRs.

Our full vision for this integrated longitudinal health record still is on a path. We’re starting small, so we’re going to send the data on housing, the transportation, the food insecurity. But there’s more work to be done. It’s still very early on in developing the pieces of this type of platform.

ME: One thing I’ve never been clear on is who identifies the need for addressing a patient’s behavioral or social health needs in the first place? Is it the primary care provider?

JB: It can come from a number of sources. It can be the PCP or the care manager or even the person checking in a patient at the front desk who the patient tells they had a hard time getting to the appointment because they didn’t have transportation. Those are things we don’t think about as relating to the clinical encounter but they definitely affect whether someone has access to care, or can get from the doctor’s office to the pharmacy or back home. So those are things that we’re bringing in as automated ways to create those referrals. And then to have that closed loop. Knowing that you referred someone for transportation or utility assistance is one step, but knowing that need was met, the next time you see that individual you have a better sense of how they’re managing their health. That’s what really drew us to a closed loop referral system.

I remember being a nurse and somebody identified a patient need at 4 p.m. on a Friday and thinking “who am I going to get to answer the phone at 4 p.m. on a Friday to ensure that this need is met over the weekend?”I would have loved to have a system that sent me an alert that the need was met and I didn’t have to track down someone on Monday morning.

So I think that’s very appealing to doctors and care coordinators sending patients back out into the community.

ME: It sounds like what you’re describing is compiling a 360 degree picture of a patient, whereas up to now we’ve only been seeing the clinical aspect?

JB: Yeah, absolutely. That’s where the more expanded longitudinal view of health really comes into play, and connecting those episodic touchpoints with health entities and bringing in those social care and community aspects. We all know the studies showing 80% of a person’s health outcomes are based on their social determinants. And that’s why we’re trying to connect that [social determinants] piece for a true health picture and connecting the health care components to that longitudinal record as well and providing a new picture of what health looks like in a digital way is the goal of the longitudinal health record and where we felt our place as the HIE was.

ME: How large is Cync Health, either in terms of providers or organizations?

JB: In the social care space we connect 300 organizations in Nebraska and about 175 in Iowa. We have all hospitals in Nebraska and about 145 in Iowa. We have clinics and FQHCs and pharmacies. I think if we count up the interface touchpoints it’s well over 3000 providers connected into our system and they run the gamut from academic tertiary care hospitals to one- and two-doc practices in rural counties.

ME: I want to talk more about those small practices in rural areas. How do they find out about services their patients may need?

JB: That’s one way we are democratizing these applications and where we saw our role as an HIE to provide those applications to providers. In those one and two-doc practices being able to use a system like this is probably not financially feasible. But at scale we’re able to provide these applications at nominal cost, working with our largest health systems and our state partners and payers to bring not only the social care platform but event notifications and other applications that normally wouldn’t be available financially to providers in small practices and organizations.

ME: Many small communities lack the network of services to help these people. What do doctors in those places do?

JB: One thing about Unite Nebraska is that the whole myriad of resources is available in that repository, so they can look outside of their own communities if they’re lacking resources patients could be referred to.

Additionally, it provides us insight as to where those gaps are. If needs are going unmet those are data points we can now bring to our state legislators and say these are resources that are constantly being referred and where the need goes unmet, and we have a solid data point to refer to. And it’s really where a lot of these conversations started because we know those gaps exist in behavioral health and housing insecurity and food resources. So this is also a way for us to bring that data to light so we can have those policy conversations and have data-driven information to give policymakers and appropriators so they can direct resources to the appropriate places.

ME: Is securing and transmitting social data any different from clinical data?

JB: Who needs to know about social care is different than who needs to know about clinical data. How we present that information in our longitudinal record is “a housing referral was made.” Some of the details about the encounter will be stored differently and will be visible differently to a provider than, say, the person who was providing the service. So those two things are differently represented in our system and that’s where having some understanding of clinical protections around HIPAA versus social care, and the more that comes into data standards the more we can apply the same levels of protection as HIPAA.

Privacy and security are top of mind. We have many points of security, layers of security, as well as governance. In Nebraska we have the HIT board, which is ensuring we’re meeting compliance standards for security, and it’s all open meetings. The other thing is we have broad participation in compliance and governance committees and the data requests that come to us are made visible to our data suppliers.

So I think there’s a robust governance in place that meets industry standards for sharing of information, HIPAA requirements, looking at the changing policy considerations from [the] 21st Century Cares [Act] into the interoperability rules. All those things are part of our organization and our mission around governance and transparency.

ME: Are you at the point yet where social data is getting into doctors’ EHRs at the point of care?

JB: That’s what the USCDI is enabling. There’s components of the social care data being brought into the electronic health record. If you’re managing a patient with diabetes and food insecurity you make different recommendations than you would without knowing that information, So that’s the kind of thing that’s being surfaced.

ME: That’s kind of where the rubber meets the road, right? It’s fine to be able to compile social information but if the doctor doesn’t know it when a patient is sitting across from them it doesn’t do them much good.

JB: Yes. And that’s where we advocate to the Office of the National Coordinator for HIT to advance those data elements into standards so that we can surface those data points into the electronic health record. That’s really the point of our work in this area, to bring that standardized data to providers at the point of care.

ME: What’s been the response from providers?

JB: Well, this is a new technology, so we have typical patterns of adoption—early adopters, intermediate adopters and the laggards. There are some health care systems with robust value-based care programs. They are the early adopters. They want to codify the workflow, bringing that data back from the community, having those alerts and flags for their care managers.

We’ve had some good uptake in rural counties because they do a lot of phone calls, so this is an automated way for them to send out a broad notification that they have an issue that needs to be addressed or referral that needs to be made without tying up a clinical person making 30 phone calls to find a resource to meet a patient’s needs. But for the most part we’re still working on adoption to get those intermediate adopters and laggards onto the platform.

ME: What advice would you have for states considering including social data in their HIEs?

JB: Consider the governance, in advance. Who has access to the data, who has access to the application versus the data and how we link that to the longitudinal health record is very important work upfront.

ME: Why is it important?

JB: For all those reasons you raised previously—how is the data being surfaced in the EHR, what are the use cases for the data once we’ve collected it, showing that we can identify service gaps. That lets us make data-driven decisions around funding for different services. I think those are all very salient points for states to consider, especially post-pandemic as we’re looking at more people with housing needs, chronic food insecurity, the things that really affect some of our health care expenditures.

ME: Did you encounter any resistance from clinicians or institutions, and if so, how did you overcome that?

JB: There’s a lot of persuasion that needs to happen. We’re not replacing anything currently in place. This is a technical enabler. But because it’s new it’s seen as a threat to established turfs. And that’s where the community convening component is important. It’s a lot of meetings and socializations around how we’re trying to link services together.

There’s always comfort in doing things the way they’ve always been done. But I think if we’re going to make data-driven decisions around human services and truly address cost and quality issues from a state-wide perspective these are the kinds of systems we need to implement.

Most of what we know about referrals and outcomes is anecdotal, because many locations don’t have the ability to link the outcome to the individual, and until we do that we have to rely on aggregate information from claims data and we don’t know if social and human services in the area actually affect outcomes in a data-based way. So that’s really what we’re trying to do.

ME: Where could someone go to learn more about Unite Nebraska-Unite Iowa?

JB: The Cync Health web page, cynchealth.org